Author Topic: Clues' case so far  (Read 973 times)

Clues

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Clues' case so far
« on: April 20, 2021, 05:54:45 AM »
This was originally posted in another thread, but as per Muon's suggestion I've made it a separate post. I will update it as I learn more.

Triggers, in descending order of resulting symptom severity
  • Hard exercise
  • Orgasm
  • Moderate exercise
  • Stress
  • Very hot or cold weather
  • Certain foods (e.g. wheat, excessive sugar, alcohol)

Symptoms, in descending order of impact on my life
  • Mood swings: Irritability, depression, anger
  • Fatigue (physical and mental) and lethargy
  • Concentration problems
  • Memory problems
  • Anxiety, including social anxiety
  • Reduced social skills
  • Impaired ability to follow a conversation. It's as if I can't process sentences
  • Impaired articulation, accompanied by a sense of stiffness in my neck, mostly on the rear right side
  • Hands and feet especially, and whole body as well, get disproportionately cold in cold weather. Subjectively feels like poor circulation
  • Poor coordination, dizziness and vertigo
  • Gut problems: Gas, constantly feeling like I need to go #2, slimy stool
  • OCD
  • Depersonalisation
  • Pain in lower back and feet
  • When fatigue sets in, legs feel heavy, as if they literally weighed more. Knees sometimes buckle while standing or walking
  • Non-sweat body odour. Seems to occur a couple of days after orgasm. My wife told me this, strangely I can't smell it myself even though I have a solid sense of smell and can definitely smell e.g. sweat odour on myself
  • Itchy skin lesions, dry and cracked skin
  • Pain in legs and stiff and tender muscles and ligaments in general
  • Stiffness and tenderness in jaw muscles. Right jaw muscle especially is feels like a hard knot and is a bit numb. Used to be worse, would have been higher on the list a couple of years ago
  • Trouble urinating; Urination is very slow and intermittent. I often don't finish properly; I feel there's more, and I have to go again very soon
  • Sometimes after orgasm I get a sensation similar to having been kicked in the testicles, but weaker: Aching and queasiness centred roughly between my abdomen and crotch
  • Dry, itchy eyes
  • Mild difficulty focusing my sight. Different objects in my field of vision appear to "float" a little relative to each other
  • Queasiness
  • Red skin on and around my nose, pronounced blue rings under the eyes, AKA "POIS face"  ::)
  • Tinnitus
  • Possibly unrelated, but I have very pronounced veins on my arms and hands. Nurses often comment on it when drawing blood

Some of the symptoms, such as facial redness and skin lesions, are present to a lesser extent even in prolonged periods of abstinence.

Notable events and facts from medical history
  • Was diagnosed with ear infection many times as a child, and was prescribed antibiotics each time. ::)
  • Had multiple sizeable amalgam fillings since childhood. All removed now.
  • Removed amalgam fillings in two separate sessions. The first one was not done properly and I may have swallowed some liquid amalgam and/or breathed in fumes.
  • At around age 20, I took yet more unnecessary antibiotics: a dermatologist prescribed Tetracycline and Roaccutane for acne. I'm 41 now, and my skin has never quite recovered from that treatment. My face was bright red and would shed large amounts of some kind of dandruff. It calmed down somewhat in the years after, but never went back to normal. With the measures I'm describing below, my skin is finally starting to look and feel pretty healthy again.
  • Have had an unhealthy amount of stress generally in my life up until recent years: My parents split in a bad divorce when I was about 8. Mom got severely depressed. I have virtually no memories from childhood, suspect I've blocked out a lot. Later in life, I've taken on a huge amount of stress at work and burned out two times. Only learned healthier work habits in last couple of years.
  • A few years ago, the meniscus between my jaw and cranium on the right side was dislodged, and I was unable to close my mouth properly. A private dentist crafted a bite splint for me, and the jaw popped back into place.
  • About a year ago, I had a visual disturbance that lasted about 10 minutes: I looked in the mirror and literally could not see the right side of my face, with either eye. Basically the whole right side of my field of vision was just gone for both eyes. I was admitted to the main stroke unit in Oslo as the symptoms were consistent with insufficient blood flow in a couple of specific veins close to one another in the left side of the brain. They initially suspected a stroke, but ran a billion tests and could not find anything. CT scan with contrast fluid, a bunch of blood tests, monitoring of cardiovascular system. Cognitive and motor function tests. Probably more tests I can't remember. Stayed there for 2 days, but as they found no evidence of anything dangerous, beyond the initial experience, they sent me home. Have not had anything similar since.

Family health issues and facts
  • No-one in my family has POIS.
  • My parents and siblings all seem to have a somewhat unusually strong immune defense, and very rarely catch bacterial or viral infections. I'm the same: Even though my POIS is clearly connected to the immune system, I very rarely catch the common cold, Norovirus, etc.
  • My father has Raynaud's disease, and struggles to keep his hands warm during Norwegian winter. Not sure if connected, but I also struggle with cold extremities and what feels like poor circulation. See symptom list above.
  • My mother and one of my siblings, as well as myself, seem somewhat unusually sensitive to coffee. We get itchy skin and get a bit wired from a moderate amount.
  • My grandfather on my father's side suffered from a serious undiagnosed mental condition. Personality disorder maybe? Doctors found a brain tumor after he died, and it was assumed that that was the cause.
  • One of my siblings has mild OCD.

Seemingly helpful measures I'm taking

NB: Since i wrote this, I've changed tack and I'm exploring a gut infection or other gut problem as a potential root cause. Hence my focus has shifted in terms of supplements and diet. I'll write about my new regimen once I know more.
  • Chlorella. Rationale: I suspect mercury poisoning but don't know for sure. Chlorella can (ostensibly) help get rid of heavy metals, but is also just healthy in general, so no risk, and cost and effort are low.
  • Bovine collagen. Rationale: Lots of skin issues that correlate with other symptoms. Lots of gut problems. Hoping that collagen can help heal the skin and gut, potentially calming the immune system.
  • Diet low on histamine and foods that trigger histamine release. Rationale: This is reportedly good for MCAS (Mast Cell Activation Syndrome) patients, and my symptom set is very similar to MCAS. This diet helps my gut immensely, more so than low-FODMAP which I also tried.
  • Stress reduction. Rationale: It's a trigger for me, and it's implicated in many types of chronic health issues. I quit a stressful job and started a company. Practicing not getting wound up.
  • Vitamin D. Rationale: I was deficient, and many people on the forums report improvements with sufficient vitamin D levels.
  • Berberine. Rationale: Seems to help my gut significantly. Less gas, firmer and healthier-looking excrement.
  • Light exercise. Rationale: Subjectively seems to help blood circulation and helps a lot with muscle and joint aches as well as brightening my mood.
  • Light intermittent fasting. Rationale: Trying to give the gut a bit more time to digest, as it's clearly not working as it should.

With all the above measures in effect, my overall symptom severity after orgasm or exercise is reduced by roughly half.
« Last Edit: July 10, 2021, 08:48:05 AM by Clues »

BoneBroth

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Re: Clues' case so far
« Reply #1 on: April 20, 2021, 07:03:24 AM »
Hi Clues!

The gas might be caused by inflammation of the intestines (after O) in combination with decreased bile production (liver inflamation) and low blood pressure (kidney inflammation). This cause SIBO and/or leaky gut that is the resaon for many of your symptoms alone (specifically skin and brain/mental symptoms). Soon the bloating will live its own life (unrelated to Orgasm) and for me, it can even cause POIS-like symptoms when I have alot of gas. Its like the bloating is a new POIS by itself, and thats not strange considering they are both creating inflammatory substances in the whole body, specifically those organs that has a hight blood flow.

I battle with a sever bloating and I think theese things makes it worse:

Eating too big meals
Cream
Milk
Grains, specificall wheet (oat seems to work but I'm not sure)
Sugar in any form and shape
Starch (potatoe, whte rice, pasta, bread)
Pork (beef and fish is ok)
Milk

It seems that I easy get constipated and the only things that help is a magnesiumoxide supplement (with aloe vera and some herbs) that always get the bowels moving (at least the content) and it feels like it cleanses the intestines. But its a balance not to take too many capsules because then I get diarrhea. SOmetimes I wonder if the peristalsis is comprimised.

Do you have any of theese symptoms:

Rosacea/excema/skin redness / itcing
Coated tounge
Bad breath
Constipation / diarreha
Yellowish stool
Nightmares after eating to late
Sugar cravings / constand hunger
Loosing weight
« Last Edit: April 20, 2021, 07:08:57 AM by BoneBroth »

Clues

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Re: Clues' case so far
« Reply #2 on: April 20, 2021, 09:56:19 AM »
Thanks for sharing your experiences BoneBroth!

Quote
Rosacea/excema/skin redness / itcing
Rosacea, yes, I think so. Eczema, I don't think so. Skin redness, definitely, at least in the face. Used to get very red easily elsewhere as well when showering or otherwise irritating the skin. Itching: Yes, definitely. I have itchy skin lesions, mostly on my calves, lower back and hips.

Quote
Coated tounge
Somewhat, yes.

Quote
Bad breath
Sometimes during POIS symptom episodes.

Quote
Constipation / diarreha
Constipation fairly often, diarrhoea rarely.

Quote
Yellowish stool
Nightmares after eating to late
Both no.

Quote
Sugar cravings / constand hunger
Not abnormally, no.

Quote
Loosing weight
I lost 10 kg, then stabilised, when starting the diet I mentioned in the original post. I'm pretty thin but not to an unhealthy extent. 187 cm, about 70 kg.

BoneBroth

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Re: Clues' case so far
« Reply #3 on: April 20, 2021, 10:25:09 AM »
I'm 180 cm / 67 kilo now but I've lost 10 kg in a year. Yes, to me it sounds like leaky gut. Doing a SIBO test might be a good idea. I think that your skin issues might resolve as soon as your gut and gut bacteria are restored. That could happen in only days or up to a year depending on the status. Bacteria and candida fungus are not easy to remove. But if I were you I would get on a candida/SIBO diet right away and go to a therapist to get some candida/bacteria killing supplement. Candida needs a regulary supply of sugar and starch, if it doesn't get that, then you might feel sugar cravings to the point that makes you sleepwalk to the nearest candy store. If your gasses smells bad then you might have eaten the wrong food (or you might have the wrong bacteria).

Oh, and an easy test if you have leaky gut is to fast for 3 days and only drink clean water and don't eat a thing. If your symptoms are better it might be a sign of leaky gut. Fasting might also restore the intestinal cells in about week. The cells of the intestines are just living for about three days so in a week you might will have a brand new lining of the gut if it gets that time to heal.
« Last Edit: April 22, 2021, 04:01:19 PM by BoneBroth »

Clues

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Re: Clues' case so far
« Reply #4 on: April 21, 2021, 01:43:49 AM »
Yes, you definitely have leaky gut. You should do a SIBO test. I'm sure your skin issues will resolve as soon as your gut and gut bacteria are restored.

I'll look into it, thanks for the tip. I'm seeing that the reliability of some of the known SIBO tests is in question. Any tips as to what sort of test would be the most accurate?

BoneBroth

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Re: Clues' case so far
« Reply #5 on: April 21, 2021, 03:16:13 AM »
I did the lactulose test, but just be sure you visit a good SIBO-therapist! Your symptoms might be typhical for SIBO.
« Last Edit: April 22, 2021, 02:18:20 AM by BoneBroth »

berlin1984

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Re: Clues' case so far
« Reply #6 on: April 22, 2021, 01:27:08 AM »
Yes, you definitely have (...) You should (...). I'm sure your skin issues will resolve as soon as you (...)

FYI, it's better if you'd rephrase this to:
You might have
You could
It might be that your skin issues will resolve

Because of:
Do not use POISCenter as a substitute for, or to give, medical advice

POISCenter is not a substitute for professional medical advice or treatment. Always consult your physician and do not rely on the information on this site when making decisions about your health. The content in POISCenter is for information only and is not reviewed by medical professionals. Similarly, do not use POISCenter to give medical advice. You may share information about your experiences, but do not play the role of health professional.


Thanks!

Clues

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Re: Clues' case so far
« Reply #7 on: April 22, 2021, 01:48:07 AM »
Sound advice, berlin1984.  :)

We should all be cautious in light of the complexity of our conditions and the lack of comprehensive research.

BoneBroth

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Re: Clues' case so far
« Reply #8 on: April 22, 2021, 02:17:42 AM »
I guess the hint was meant for me. Yep, I got too exited here since I share the same symptoms as Clues. I've added some "mights" and coulds" in my text above.  ::)

demografx

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Re: Clues' case so far
« Reply #9 on: April 22, 2021, 03:35:34 PM »
Yes, you definitely have (...) You should (...). I'm sure your skin issues will resolve as soon as you (...)

FYI, it's better if you'd rephrase this to:
You might have
You could
It might be that your skin issues will resolve

Because of:
Do not use POISCenter as a substitute for, or to give, medical advice
You may share information about your experiences, but do not play the role of health professional.


Thank you!
Demo
« Last Edit: April 22, 2021, 07:55:13 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Clues

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Re: Clues' case so far
« Reply #10 on: April 28, 2021, 08:39:46 AM »
Added some symptoms I'd forgotten to mention, plus a brief medical history. Let me know if anything else would be interesting to know.

Muon

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Re: Clues' case so far
« Reply #11 on: April 28, 2021, 08:45:20 AM »
Let me know if anything else would be interesting to know.
Family health issues.

Muon

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Re: Clues' case so far
« Reply #12 on: April 28, 2021, 09:29:23 AM »
Was diagnosed with ear infection many times as a child, and was prescribed antibiotics each time.

How did they establish this diagnosis, based on what?

Clues

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Re: Clues' case so far
« Reply #13 on: April 28, 2021, 09:44:10 AM »
Family health issues.

Good point, added those.

Was diagnosed with ear infection many times as a child, and was prescribed antibiotics each time.

How did they establish this diagnosis, based on what?

I don't know unfortunately, as I was a young child at the time. Also, my memory is very bad. (Both long-term and short-term.)

I suspect the diagnosis was just a guess based on strong, lasting pain in or around my ears.

Based on my mother's account of events, the doctor sounds useless. He was adamant that repeated antibiotics treatments would have no side effects whatsoever.

EDIT: Muon, if the ear thing is interesting for whatever reason, I can ask my mother for more details.
« Last Edit: April 28, 2021, 09:46:32 AM by Clues »

Muon

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Re: Clues' case so far
« Reply #14 on: April 28, 2021, 09:56:28 AM »
Recurrent ear infections could have been recurrent sterile inflammation.

Clues

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Re: Clues' case so far
« Reply #15 on: April 29, 2021, 02:11:04 AM »
Recurrent ear infections could have been recurrent sterile inflammation.

The literal translation of the Norwegian term for what I (ostensibly) had is "ear inflammation". I just called it ear infection because it was the most similar common medical term I could find in English.

Btw, apparently ear inflammation is one potential physical manifestation of mast cell activation syndrome.

Quote
Otologic: Common ear symptoms include ringing in the ears and irritation and inflammation in the ears.

Btw I do have ringing in my ears as a POIS symptom, forgot to add that.

ZombieRehab

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Re: Clues' case so far
« Reply #16 on: June 21, 2021, 09:50:34 PM »
Clue, I also had extensive ear infections... something like 45 of them, and lots and lots of antibiotics, before I had a corrective surgery around age 7.